Time for self?

Katielu

How do you find time to think, to breath, to be something other than a caregiver?

My DH has been I stage 4 for over a year and is recently show more decline. I work from home most days, and he will come in the office and sit. He asks me when I will be done multiple times. I update a dry erase board every morning with what time I work and what time I finish, it’s the same each day.

How do others find time to breathe? To think? I left the house for support group for two hours, earlier in the week. I left to go to work one day. He acts like I am going shopping or out with the girls. He asks things like, who will I see, are there men there, what will I do, who will I talk too, what do we talk about…. On and on and on.

I find I stay awake until he goes to sleep, just to have some time for myself, then I am overtired in the mirning. Last night, he woke me up 3 times within the first 2 hours we were in bed, he thought he heard a car door, he thought he heard a big truck, I can’t remember the third one. He could go look out the window and not wake me up, but seems to think if he is awake I should be.

i’m sorry, I have to work now, I am in for another day of trying to work while ignoring him as he talks about nothing over and over. When I am tired, I am just over this horrible mess and I know I have only just begun.

harshedbuzz

@Katielu

It's hard to recharge your batteries as a fulltime caregiver.

I wonder if a day program for your DH might be the answer to this situation. It would give you some space and add activity to his day.

HB

Katielu

Thanks HB.

My support group people told me about one that is close by. Unfortunately, he is still too aware to be able to do that. He is able to go for walks on his own, trim up plants in the flower beds, start and fold laundry… he just doesn’t. Sometimes he will help me if I start, sometimes he just follows me and talks to me. Sometimes he will do a task, if I ask, sometimes not.

I know I am not unusual here, I know we all do it, and I am fortunate that he can still do all his ADL’s on his own.

This morning, I am just tired. Earlier in the week, I felt like I had a handle on things, this morning, I just feel defeated. It will pass, and we will keep going, just like all of you.

thanks for listening

toolbeltexpert

Katielu I get what your saying. When my dw was still home I did some if the same things, like not going to sleep till after my dw did. She would sometimes come and say I dot know who you are but this is my house and I need to leave. It was tough going back to sleep on those nights.

I wasn't working at a job anymore except in my garage on machines and I could just drop everything to help dw thru the day. I know your not able to do that.

Maybe you could hang a sign on the door your on a phone call?

I think the folks who still work are real heros to their lo's

You might think he's not ready for a day care but you might just be surprised, earlier might be better.

Katielu

Thank you.

I will set up an appointment to tour the daycare and discuss it with them.

I do know it’s not his fault. Most the time I do well, I think I am just tired.

I appreciate all the shared insights

S. Lynch

Katielu, my DH and I are about the same place. He wanted to go to lunch with me and a friend and he said he would sit at a different table. He has a hard time when I am away. He has some favorite tv shows and sometimes I can get him to watch them (again) while I work on something. My DH often falls asleep after lunch for an hour or so, and that helps.

He was having nightmares or waking episodes and his neurologist had him start taking melatonin. It has helped him for some time, although I am starting to see them return. I am a light sleeper and have used a baby monitor in our bedroom, while I sleep elsewhere.

We live in a rural area, and there is no daycare for 90 miles. Sometimes a family friend will take him out, and I have to chose between taking a nap or doing errands. I get up earlier and stay up later,just like you, to have quiet moments. Walking and meditation helps, but tired is a common description of how I feel. I hear the sadness in your words. I don’t have any great wisdom, just an understanding. This forum lifts me everyday, gives me courage and faith that I can make this journey with my loved one.

Pathfinder52

I've been at this (Alzheimer's) for 10 years now. About 5 years in, it became completely clear to me that self-care was the only way to survive with any degree of calm and confidence (and I'm a retired RN). In 2019 I published a book, Self-Care Strategies for Family Caregivers that I can make available to you if you are interested. I'm also building an online course to help caregivers learn self-care skills (no, they don't come naturally).

What keeps me sane (DH is about at stage 6) are these things: 3 days of daycare each week (6-hour days), very simplified meal-prep as he eats very small portions, three friends who will serve as "sitters" for DH so I can get to a yoga class or go shopping, and recently, we added Seroquel so his evening rants will calm and I can get him to sleep.

Wishing you all the best.

--p

Katielu

S.Lynch,

The Sadness is overwhelming at times. most of the time I ignore it. I think I am doing all the right things, I do my job well, I take him to his appointments, answer the same questions over and over. I feed him, do his meds, hold his hand, provide reassurance.

I try to get out on my own, I am finding it harder and harder, but I keep trying. I guess today is just a pity party day!

But I agree, this is a good place to turn too.

upstateAnn

I also stay up for about an hour after my DH does to bed. It is an integral part of my self are. Luckily, DH is la,ee0 when I go to bed and still sleeps through the night!

Jo C.

This certainly sounds like a stressful set of challenges, I am sorry for what you are experiencing; it will take a little bit of maneuvering to find which options fit best to get things a bit more tolerable.

It sounds as though your husband has developed feelings of insecurity and anxiety and you are the soothing person that eases him. It took me some time to learn that if my LO was driving me to distraction; imagine how dreadful it was to be my LO and have to live with all that upset and anxiety whirling about inside my LO's head. When I realized that, it also came to me that since my LO could not seek medical help, it was up to me to do it. So glad I finally did; it made a significant difference.

Does your husband have a dementia specialist? If so, considering the persistent 24 hour behaviors and his upset feelings, it may well be time to make an appointment to have him assessed. for medication assistance. If you decide to do that, it would be far best to write a detailed memo outlining all of your LOs behaviors and issues that do not respond to interventions; that he is suffering and if it may be time to adjust (or add) medications to assist. It is important that the memo gets to the Neurologist prior to the exam visit. There are meds that can be of positive assistance for our LOs.

As for Daycare; there are many different models of Daycare and they are different from one another in services, staffing, programs, etc. A little screening and even visitation for those that seem they may fit, will be helpful for the best outcome. It may take a bit of time for a LO to acclimate to a new setting. The Daycare can be for five days a week, or a few days a week, for full days or part of the day; it can vary according to your needs, your LOs tolerance and the Daycare services. Some have pickup vans, most do not. Some provide lunch; others may not or it may be dependent on how many hours the client will be present.

Sometimes when a LO feels negative about the Daycare, and since your DH is so high functioning, it can be quietly arranged with the Admin staff that the LO thinks he/she is being hired to assist. This usually encompasses helping to set up chairs, tables, small errands, folding napkins, towels, helping with activities, etc. Some Members have found that to be a turning point for their LOs.

Another option; perhaps he would benefit from having a good friend on a regular basis. That option would be to hire a "friend" companion person but to introduce them as a friend and never let on it is a paid position. This person can come as many days/hours as you wish; they can take walks, go to lunch, visit various other sites, engage in programs at a senior center, do an exercise program at a local park center; do crafts or other work together, they can watch TV together and do other things to take your husband's focus from you and onto the companion who will dynamically make themselves the center for your husband. I found such a person for my LO at a local church and it worked out very well.

You sound very busy with work at home and getting doctor's appts., and screening Daycare or companions may sound overwhelming right now, but once things are settled, it can be a big positive.

I send best wishes your way for a good outcome; let us know how you are and how things are going.

J.

hiya

I got my husband to try a church respite day care for the first time this week. I visited by myself a couple of weeks ago. My husband is a solid stage 4 but I believe beginnings of stage 5. The leading lady suggested I tell my husband he is there to volunteer. I was shocked, it worked!!! It may be worth a try.

PlentyQuiet

My DH is on the Stage 4/5 line. I thought he was too aware for a day program as well. I found a 4 hour program one day a week for him. I described it as a social club and he loves it. He enjoys the activities and seeing other people. It is for earlier stages (no incontinence etc) so there are people pretty much just like him. He is always a bit calmer in the evenings on those days as well.

I live for those days.

jfkoc

It seems that keeping a loved on busy/occupied as able does make for some calmness. Good suggestions above.

It is likely that "time" is now difficult for your husband. Maybe an easy to read, non digital, timer would help.

As for time for yourself...well there is little to none some days. At least not blocks of time. Anyway you find find something to do together that would be relaxing? Maybe a simple puzzle or coloring or painting?